In the last couple of weeks you may have received a leaflet through your letterbox entitled “NHS: Better information means better care”. This leaflet is about the changes in the way the NHS shares your data. Contrary to expectations the policy change has nothing to do with data collected, shared and used for your treatment within the NHS. Medical data is already being collected and stored on central databases that can be accessed by medical professionals involved in any aspect of your care.
The policy change will allow the NHS as a whole to share information with third parties. The government information on this dances around this somewhat but does admit it will to to ‘organisations outside the NHS’. They try to reassure saying that your identity is protected but go on to say that they “sometimes release confidential information to approved researchers”. If you investigate further then you are lead to a very confusing set of pdfs written more for their internal use than for the public.
What will be shared? HSIC, which is in essence the NHSs technology department will in April take a copy of everyone’s medical record and all hospital and other patient data. This will not be annonymised but will be stored on their servers. When a third party or other NHS department wants access to the data it will be cleaned to remove all non-essential information then a copy will be shared. It is important that while personally identifiable information would usually be removed at this point it is not always – if for example the exact location and age of patients was relevant to the study postcode and birthdate could be left. This could potentially be cross referenced with electoral role data to identify individuals.
As the change in policy is opt in automatically you need to choose and act before April if you personally want to not share your data. To do this you need to write a letter to your GP surgery. The letter should include:
- Your full name, address and birthdate and the fact that you are a registered patient at the practice
- That you would like to exercise your choice not have information shared outside the practice and that your would like a note added to your record stating that
- That you would like to choose to not have information from other services shared and you would like a separate note added to your record.
- A signature.
It is then up to your GP surgery to attach a code to your file that will prevent your data from being grabbed by the HSCIC in April. There is unfortunately no way to check that the note has been added to the file or to see that the HSCIC did not take your data.
So what does this all mean? There are a couple of takeaways – if you are willing to let your data be shared with another government department and potentially be shared on an annonomised basis, you need to do nothing. The likelyhood is that having your data shared in that way will not impact most people negatively. If you do feel that you could be impacted by this – perhaps you know your medical file contains inaccuracies or you have a medical condition you would not appreciate being known then you should write now to choose not to share.
Personally I chose to write to the GP to choose not to share – you need to make a choice or have it made for you.